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To New Parents of a Child With a Nevus: Keeping Vigil

By , Staff Writer, Nevus Outreach

Ashfaq Marghoob, MD, director of Memorial Sloan-Kettering’s regional skin cancer clinic in Hauppage, Long Island.

Ashfaq Marghoob, MD, director of Memorial Sloan-Kettering’s regional skin cancer clinic in Hauppage, Long Island.

The birth of our baby is among the most sacred and joyous occasions that any of us who are parents will ever experience. But when our little one arrives unexpectedly with a stunning congenital melanocytic nevus (CMN), some of our euphoria may be swallowed up by unspeakable sadness and fear — and so many questions.

What is this giant birthmark?

Did we do something to cause this?

Can it be removed?

How will it affect the life and well being of our sweet baby?

“Do not panic,” says dermatologist Ashfaq Marghoob, MD, who likes to reassure parents. “Most children with nevi do fine.

“I like parents to be aware, too, that a nevus is a chance event,” says Marghoob. “It has nothing to do with anything they did, or did not do, before or during pregnancy.”

Marghoob serves as director of Memorial Sloan-Kettering’s regional skin cancer clinic in Hauppage, Long Island. He currently cares for dozens of patients with large CMN and has consulted on hundreds more. He also cares for hundreds of patients with smaller nevi.

The most important thing for parents to know is that the management for their child should be individualized. This personalized treatment plan is based upon considerations such as the size of a nevus, the number of satellite nevi, physical findings and status, neurological status, cosmetic concerns, and so on. In other words, the management approach chosen for one person may not be ideal for another. In addition, management of your anxiety needs tender care, too, he tells moms and dads.

According to Marghoob, persons with isolated small and medium CMN (less than 8 inches) are at low risk for complications. And even though persons with isolated large CMN may be at higher risk, rarely will complications actually arise. The risk for complications tends to increase, however, in individuals with both a large CMN and many satellite nevi.

When complications do occur, they fall into several categories:

Malignant melanoma may occur in the nevus or in the central nervous system. While much is yet unknown about why melanomas occur, the absolute risk appears to be approximately 5 percent. In other words, 95 out of every 100 children with a large CMN will not develop melanoma. And there are some recent studies suggesting that the risk may be lower than 5 percent with risk estimates as low as 2 percent.

About 7 percent of those with large CMN may develop neurocutaneous melanocytosis (NCM). This condition occurs infrequently and is due to the deposition of melanin — the pigment particles that give color to our hair and eyes — in the brain or spinal cord. Although the presence of melanin in the brain may lead to symptomatic complications such as seizures, most people with NCM have no symptoms.

Complications could also be related to cosmetic issues or psychosocial development.

Generally speaking, there are a few guidelines that may help parents care for their boys and girls with CMN. The first thing Marghoob recommends is finding a physician with some knowledge about this condition. This is often a dermatologist. The best place to find such a specialist is at a university teaching hospital. Physicians in these centers can often coordinate care and help decide if and when to see a neurologist or other specialist — or whether to get an MRI scan of the brain. The main reason to get an MRI is to look for the presence of melanin in the brain.

Parents can also do the following:

Become familiar with your child’s nevi. Look for subtle and focal changes in color or texture. Feel the nevi and note any focal changes in consistency. If you suspect any changes, ask the doctor to evaluate the change and to decide if a biopsy may be desirable.

It is totally acceptable to follow CMN without surgical intervention. If surgery to remove a nevus were desirable to guard against melanoma, or for cosmetic purposes, then consult with an experienced plastic surgeon. Keep in mind the aesthetics and functional outcome of removal.

When your child is playing outdoors, protect his or her skin from the ultraviolet (UV) rays of the sun with rash guards or special clothing that offer an ultraviolet protective factor (UPF) of 30 or more. Marghoob prefers that the large nevus be protected from UV rays by clothing — as opposed to chemical sunscreens. This is because normal skin acts as a barrier that prevents absorption into the blood of chemicals applied to the skin surface. This barrier function, however, may not work properly in the skin overlying a large CMN. If clothing were not an option, then the use of inert physical blockers such as zinc oxide or titanium di-oxide with an SPF of 15 or higher are preferred over chemical sunscreens. Although there is no proof that the chemical sunscreens have any harmful effects, the chemical sunscreen ingredient avobenzone may be safer then oxybenzone.

Marghoob has been caring for kids and adults with CMN since before he became a dermatologist. In fact, Marghoob began his medical career as a family physician and, while in practice, he conducted research in the field of CMN with his mentor, Alfred Kopf, MD. Learning early on about the turmoil parents were going through, and realizing the paucity of information and misinformation about nevi persuaded him to try and shed some light on this topic, he says.

“What keeps me going are the wonderful interactions I have with CMN patients and their families. It is a joy to watch these children grow into young adults.

“Although I may be teaching these patients and families something about CMN, they in return continuously teach me about life, love, courage, resilience — and everything that makes us human!

“It is an honor and a privilege for me to be involved in their lives.”

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